Meet ALS sufferer Jason Becker: more inspiring than a bucket of icy water

You probably haven’t heard of Jason Becker. In the late 1980s he was God’s gift to rock fans. With frizzy black hair and a shiny leather jacket, he was a virtuoso performer whose guitar solos silenced head-bangers in awe. Today he is still considered to be one of the world’s most gifted guitarists – even though he hasn’t played strummed a note in years.

At the age of 20, Jason was a rising star and had just become lead guitarist for rock idol David Lee Roth. But on the day he auditioned, friends noticed that he walked with a limp. This unexplained hobble soon became a serious weakness. Over the weeks and months that followed, it wasn’t just walking that became difficult but his arms and fingers became weak and clumsy. For a while Jason learnt to play the guitar one-handed until eventually he could play no longer. He was diagnosed with a condition called ALS and from thereon things would only get worse. Given five years to live, this disease would rob him of all that he loved and offer no hope of recovery. That was over twenty years ago. Remarkably, Jason Becker is still alive today.

Never heard of ALS? You probably have, actually

Until people started soaking themselves with buckets of ice cold water a few weeks ago, few of us had heard of a condition called ALS. The three letters stand for ‘Amyotrophic Lateral Sclerosis’ – a term we don’t normally use in the UK. You and I will better know it as Motor neurone disease (MND) – the affliction that confines Professor Stephen Hawking to his wheelchair. ALS / MND is a rare neurological disorder that slowly destroys nerve cells in the brain and spinal cord that control movement. Muscle strength is progressively lost over a period of months; and as Jason Becker and Stephen Hawking discovered, complete paralysis is the end result. It is a cruel fate – the sufferer is left fully aware and alive but trapped within a frozen body. Most people ultimately die within five years of diagnosis when their breathing gives out. A few, however, like Jason and Stephen Hawking, defy the odds.

The ‘ALS ice bucket challenge’ craze has done well to wake up the world to ALS / MND. The strange ritual started anonymously on social media and asks participants to tip a bucket of ice cold water over their head. (Quite why, is anyone’s guess.) Refusing the challenge requires you to donate money to a ALS / MND charity. As bizarre as it sounds, it’s been a shocking success and the list of celebrities who have taken a chilly soak is impressive: Kyle Minogue, Victoria Beckham, Benedict Cumberbatch – even Stephen Hawking himself. (Try searching YouTube for lots of hilarious videos). But even more incredible is the amount of money raised. By the time you read this over $100 million will have been raised for ALS / MND charities.

The end of Jason’s tale is more incredible still. Now restricted to a wheel chair and needing a ventilator to breathe, he refuses to be silenced. By communicating with eye movements and computers, he continues to find meaning and purpose in his life. He writes, meets people, forms intimate relationships – and even continues to compose music. In his own words, Jason says that “Life isn’t only about moving.” His story is more rejuvenating than any bucket of freezing water and his music has evolved with him. His albums are played by other musicians, and can be bought online and in music stores. Look out for them. You’ll probably find them in the section labelled “inspirational”.

Thanks for reading – all opinions expressed are my own. Feel free to add your thoughts in the comments below.